5. Get ready for bed by herself, in 10 minutes. CHECK! When she is really motivated, she can do it. It takes focus and she has to be in the right mood to be efficient.

6. Leave the house, with her own backpack on, and get on the school bus while we watch. CHECK! Well, I'm giving it a check. She left the house, went down the stone steps (with her backpack on), to the bus. She needs a small boost getting on that first step onto the bus.

7. Stretch with the Dynasplint 3x week. Nope. We are using it more than we used to, mostly b/c we are looking at stretching options because she is so tight. We need more stretching, or something, b/c spasticity/contracture is a problem--especially on her right foot.

8. Do CME exercises, or similar type balance play on playgrounds, 3x/week. Nope. Granted, this was ambitious. There just wasn't time to get this going.

9. TAKE SWIM LESSONS UGH this is my biggest disappointment in myself regarding this list. I just couldn't fit it in the schedule. I don't know how to make this more of a priority. Elena wants this.

11. Sleep in a tent! CHECK! We got a new tent for Christmas, so hopefully we won't get drenched next time.

12. Take the kids to the movies. Nope. We've had some movie nights at home, but we haven't been to the theater yet.

Elena's own goals:

1. Climb the rock wall at PT by herself. CHECK!
2. Take piano or voice lessons. CHECK! (piano)
3. Have an Easter Egg Hunt outside the house. Nope. It rained on Easter. We did have hunts inside, though.
4. Spend time in the snow--sledding and skiing. CHECK!

Bonus Vivian goals:

1. Roller skate CHECK!
2. Make her own toast Well, we tried. She ended up almost sticking her hand right in the hot toaster, so we'll have to try that again sometime.
3. Play frisbee with a dog (E likes the addition of a dog too) Untested.
4. Write a letter (she can write her name) She wrote a note to me, the first day after I left work, wishing me a great day off. CHECK.

And goals for me:

1. Spend more time with grown-ups. CHECK! Not as much as i'd like, but yes.
2. Continue to do something after the kids go to bed. CHECK. It's much better now that I am home.
3. Run/bike some races around town. Well, I did some with Elena. Half-check.
4. Paint the foyer of the house. No, but I did paint the playroom, which is probably better.
5. Learn how to use my new sewing machine! CHECK! Halloween!
6. Find a babysitter. Nope. We still need to do this one.

Overall, I think we did a pretty good job on these. Being home is going to change a lot of things, one being structuring homework so we can fit in more activities--or less of them. Elena is having some school challenges, which brings academics to the forefront, competing with motor skills--it's hard to find the time (especially when her everyday activities take her longer to accomplish than her peers). I'm not sure how well we balance school/home/exercise/therapy/rest/down time, but I do know that me being home will be an improvement in a lot of these areas.

Preparing, celebrating, and cleaning up from our Christmas celebration has taken most of my time and energy lately. So, here is the nutshell version.

First of all, preparing for Christmas was extra-special because I had more time to do it. Despite a decade of trying, I finally got the outside of the house lit this year.

Wood Pile reindeer

Night Lights

We made three (!) kinds of Christmas cookies. I even helped volunteer at Elena's school to help her class make ginger snaps!

Viv and I helped E's class at school

We all went to a free (!) Christmas concert by the Municipal Band. It was great! The kids even knew some of the songs and sang along. The girls went to a work holiday party and got to see Santa! Jason and I went to our friends the H's holiday party--with only grown-ups and it was fabulous! Vivian had her preschool Christmas pageant. They even played handbells to Joy To The World. Viv was fantastic!

It was dark inside. You get the idea, Viv was excited!

There was plenty of seasonal music around the house, and lots of watching our video of The Nutcracker (Baryshnikov/Kirkland version). As a surprise, I took the girls to the theater to see it live!

On our way to the Warner

After the show--girls in the city!

We had both sets of grandparents come to our house. It was wonderful to spend time with family! The girls enjoyed their gifts and their company. Elena has been working hard on her Christmas piece, and she played "Jingle Bells" on the piano for everyone!

We actually had cards ordered (Elena did the artwork!)--but they arrived later than expected. The good news is the company waived the charge, the bad news is they will be sent late. I figured I'll consider it a win if we get them out before February.

I know this post is up late--there is a lot more to write about, but I don't want to get any further behind than right now. Merry Christmas, Happy Holidays, Happy Solstice, Seasons Greetings to everyone!

Tuesday, December 10, 2013

I could write more eloquently about tonight, but I'm so tired, and it's late.

The kids were off school today (snow day, but mostly dreary sleet). The girls were pretty good all day. E especially (she's been a little ornery lately).

We had a plan to decorate our Christmas tree tonight. I didn't want tonight to be a late night for the kids going to bed, but dinner ran late and the kids needed a bath. Anyway, we started to trim the tree--normally after a bath, we don't put E's shoes back on. But we had to, b/c otherwise trimming the tree would have been really really difficult.

So we did.

And we all put on ornaments.

All four of us.

At the same time.

Moving around, occasionally bumping (very infrequent), but I was very aware of how much stopping and starting it takes.

And still it went, for close to a half an hour, all four of us trimming the tree. It still feels like a dream.

We never held Elena's hand, or picked her up, or moved an obstacle out of her way.

Sounds like an ordinary way to decorate a Christmas tree, right? Not for us...tonight was extraordinary. I'm teary just thinking about it...I want to save it forever.

Friday, December 6, 2013

Hot and Cold
The weather has been just starting to match the season. I decided to take the girls out a month (?) ago (this is a catchall update) before the leaves fell off the trees--it was beautiful out, but freezing!!

Beautiful Fall

Running

Hot Cocoa

The New Playroom

When Elena was learning to walk, she fell "like a tree" all the time. We decided we needed a "crash room"--so we emptied our dining room, bought the thickest carpet we could find (and put the thickest pad under it), removed any furniture, padded any and all "corners", and gated the sides. That was our arena before Elena could move about the house safely (roughly, two years). Now, our entire main floor is littered with kid stuff--Elena has trouble carrying lots of things, so we never stressed cleaning up after herself--and we didn't really stress it with Vivian either. Now that Elena can navigate the entire house on her own, I decided to move the playroom to the basement and reclaim our dining room (eventually).

I've been working for the last month on the new playroom--cleaning, painting, putting together furniture, etc. I still need two chairs for the table. Pictures when they arrive!

Rainy Indoor Day (first days as a stay-at-home Mom!)

It was such a yucky day...so we made the most of it, gross-motor style. Here are some highlights of our obstacle courses (Vivian not shown).

More Riding at Fairhunt, with Bonus Vivian!

Elena's riding is improving. Some of the best cues Susan has given Elena have been referring to her pelvis as "a bowl" and how she doesn't want to "tip the bowl" (less lordotic posture). Elena is starting to understand what a pelvic tilt means, and this is one (out of two) exercises that maintain that awareness. She is also posting better. Starlight a.k.a. "Teacup" is a good pony, but she is very old and will retire soon.

Just like her big sister

Roller Skating!

The local recreation center in town offers free roller skating every Friday night and Sunday evening. It's wonderful--the staff are so friendly, encouraging, and nice; the other kids (honestly, all of them) have been super nice. It's full of people falling, not just Elena, which is a refreshing change.

Granted, Elena has a harder time on skates than anyone else I see there. Still, she enjoys it, and it's a new and different balance challenge--and that's always good, in my opinion. Elena skates best with two adults (one on each side, normally Jason and I) or one adult if she's doing really well. She also wears a harness I bought a long time ago (thinking it might help with skiing or bike riding) that has a handle near her back.

We have three goals when E is skating: 1) for her to keep her head up (mainly to keep her butt in line as much as possible), 2) to try to put all four wheels on her right foot on the floor (this is rarely successful) and 3) to keep her feet moving (otherwise she stays on her left foot too long). I think she is doing beautifully, and she improves every time. Elena is discouraged when she sees Vivian, now skating by herself; we try to be happy for everyone, and just have fun out there.

We had a really great experience when a little gem of a girl Elena's age skated right up to her as I was lacing up her skates, and she introduced herself and asked about Elena's braces. Then she said she doesn't like wearing her brace either. I didn't see one; she said she wears hers all the time when she is not exercising. I think she was talking about a back brace for scoliosis (I didn't get that far in the conversation, as she and Elena were talking). It was nice for E to realize other people wear braces, even if it isn't obvious.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.